On Saturday, April 11, 2026, during World Parkinson’s Days, Edwin Barentsen received the Mies Rijkse Award for his volunteer work on behalf of people with Parkinson’s disease. Mies Rijkse is the founder of the Parkinson’s Association, and once a year, a volunteer who has made a significant contribution is honored with this award. Eight volunteers were nominated for the award this year.
This all began when Edwin was diagnosed with Parkinson’s disease on November 11, 2014. He was 54 at the time and was in the midst of advancing his professional career. He was working full-time in the graphic design industry and was also pursuing a master’s degree in Entrepreneurial Business.
In 2015, he joined the Parkinson’s Association. He soon became an instructor for the course “Parkinson’s? Stay Focused!”. This course highlights the areas where cognitive function declines and what you can do about it. Mentally, you may struggle with multitasking, get distracted easily, forget things frequently, lose your train of thought, have trouble finding the right words, and so on. He taught this course for four years. Each year, he had a group of about 12 people.
In the meantime, he had also joined the Patient Researchers group in 2016. He served in various roles there for over seven years. The highlight of this work was the COPIE study, which led to the book*A Stroll Through the Parkinson’s Brain*. Later, an English-language edition was published, and conversation cards were developed. Edwin has contributed to approximately 15 studies. He then began looking for volunteer work for people with Parkinson’s closer to home.
He has been volunteering in his hometown of Amstelveen since 1995. His motto is: “If you’re part of a club, you should also contribute to it.” Parkinson’s disease put his paid career under strain. This gradually led to him doing more volunteer work, until he was declared fully unfit for work in 2019.
His volunteer work keeps him as busy as a full-time job. He is still able to put the experience he has gained in project management, launching new initiatives, and graphic design to good use. He does this for about 10 organizations.
In 2021, he founded Kleurrijk Leven. The first initiative under this umbrella was the Kleurrijk Leven Café. Here, every Wednesday, you can talk with someone who has personal experience living with Parkinson’s disease. For people with limited mobility, he founded a dance group in 2022 that meets every Tuesday afternoon. He also organizes a large dance event twice a year. 2024 was marked by the founding of the Parkinson Café in the Uithoorn region. They meet there four times a year at various locations. He also organized a three-part boxing clinic and a three-part chair yoga clinic, because exercise is so important for people with Parkinson’s. Around the turn of the year 2025/2026, he founded a Parkinson’s choir. They now meet every Monday morning to sing and do all kinds of breathing exercises. And then there are all sorts of one-off projects.
His latest major project is the Parkinson's Games 2026. He is organizing the Parkinson Games 2026 in collaboration with six Parkinson Cafés from the Alkmaar, Amsterdam, Haarlem, Heemskerk, Uithoorn, and Woerden regions, as well as ParkinsonNet. The games are a perfect fit for preparing for The Parkinson Games—the Olympic Games for people with Parkinson’s. Participation is highly recommended by The Parkinson Games, an initiative of Parkinson2Beat.
